Video Swallow Study

If the Monday/Tuesday saga wasn't bad enough, Willie and I had to be out the door at 5:30 am to make it to his swallow study at the same place on Wednesday morning. I had leg cramps in the night, but no where near as bad! The morning traffic stank, as always, but whatyado? We arrived on time at 7:15 and got checked in. They were ready and waiting for us. I was all draped up in lead apron and thyroid shields so I could hold him under the fluroscopy. They put a little lead apron on his "parts" so they wouldn't get irradiated. They got him all rigged up in a special seat, and when the tech gave the word, the beam came on. Willie's innards were lit up on the screen. Weird. She gave me the nod to feed him and started counting swallows, up to 12, and the beam was turned off. So far no aspiration with the thickened liquids. Now for the thin. The beam was turned on again and she counted 15 swallows. Beam off. Went to get the doctor. The final word is that he isn't aspirating during swallowing, but there is a rather large amount of residual sitting outside the stomach, even after ten minutes, after only 27 swallows. It is thought that he is refluxing this residual and may be aspirating it. They recommend Prilosec or Prevacid, and an esophogram, and smaller, more frequent feedings. They will fax a letter to his pediatrician in time for Monday's visit, and mail me a copy. We can have the esophogram done at home. We were home by ten am. For some sleep!

New Tooth & Optho

Having worked a 12 hour shift the night before, I just barely had time enough to scoop Willie up and toss him in the car and race down to the valley for his much awaited opthomology appointment. And we waited. And we waited. The waiting room was packed and and we waited some more. For hours. There was a young Mom with a baby stroller all closed up tight like you do when there's a newborn inside. Her eyes were closed and she was wobbling on her feet, swaying to and fro, ready to fall over. From my spot in the hallway, I kept an eye on her and on the waiting room. Finally, a seat opened up. I woke her up and she jumped out of her skin! She was asleep on on her feet. I told her about the seat and she went over and promptly collapsed into it with her arms fold protectively over the opening to the stroller hoods. Poor thing.

Another Mom asked me a question about Willie's bracelet on his foot. She hadn't gotten one. Did that mean her son Mason wasn't registered? Is that why they hadn't been called? Our appointment was for 10:45, theirs was at 9:00...neither of us had been called at noon. She went off to find out about getting Mason's bracelet and I promised to save her "spot" in the hallway. She came back 30 minutes later with Mason proudly wearing a bracelet. We wondered if that meant that they were now behind every one else, even though their appointment was for over three hours ago. We wound up visiting and discussing other long waiting room adventures, Down syndrome, kid's health in general, etc. Another Mom was there with her 9 month old baby. Her 12 year old child had Prater-Willis syndrome, and having heard me mention Regional Center a few times, she joined in the discussion. They hadn't gotten much in the way of services, and she had some concerns about her new baby's development. So, maybe this is why I was here so long...both of these ladies lived within 20 miles of me. The Mom with the new baby and the 12 year old needed help and wasn't getting any. I was able to fill her on on what she should be getting, and the best way to get her baby evaluated. At the end of our discussion, our names were called. Mason and his Mom wound up being called right after us. We walked out to the parking lot together and exchanged phone numbers!

Willie's eyes were dilated and he slept through the entire exam. The doctor, as always, had an intern with him and was very thorough and very informative. He answered all of my questions without being general and without treating me like a nuisance. He said DS kids and DS babies several times, but not in a dismissive way. Then it was time to wake Willie up so the doc could evaluate the nystagmus.

All in all, he said Willie's optic nerves are small, but not alarmingly so. The optic disk or cup is not hypoplastic. He is near sighted and will need glasses eventually. See you in 6 months unless you think he should be seen sooner? Well yes, I do think he should be seen sooner. If he's going to need glasses, I'd prefer to get them sooner, rather than later. He's already got disadvantages, let's ease some of those in a more timely fashion rather than wait. Okay then, see you in four months, and yes I will write a letter to your doctor to take with you today.

An hour later we were leaving. The Other Mommy pulled me out of hot water once again and raced to my house to see the older kids get off their buses. We got home at 3pm. The Dear Daddy got home at 3:15, and Beth arrived for Willie's OT at 4. She left at 5 and at 5:05, I was in bed for a much needed nap! At 6:30 I hobbled out of the bedroom, down the hall, calling The Beloved's name, crying, "Help me leg cramps bad really bad both legs really really really bad." It happens every time I'm up for a 24 hour stretch. Having gotten up with The Littles Monday morning at 6, I was about 35 hours in when I got my first sleep! The Beloved massaged, The Girlie ran for the "small square white bottle on my desk" of Hyland's leg cramp tablets with quinine, The Middle danced around in a panic because I was clearly dying, The Girlie came back equally panicked "Mom! There's only two!" Think fast. "In my work back. Top zipper. Get more. Now!" Sent The Middle for water. The Beloved popped the two tablets we had into my mouth without water. The Girlie returned with the bottle. Fumbled. Dropped it. I'm still crying and moaning like the tormented woman I was. The Middle had returned with the water but was still deathly pale, because I was, after all, to him, dying. The Beloved retrieved the fallen bottle that got kicked under the couch in the scuffle, but that meant he had to stop rubbing my legs. The Girlie, crying. "Mommy. I'm sorry." She never calls me Mommy. Just Mom. The Beloved, "Every one calm down, it's all okay. We'll fix this!" The Middle not convinced. The tablets in my mouth. The water. The rubbing. And three minutes later all was calm. Fine. Pain free. Dang! It was me that felt like rabid dogs were ripping the muscles off my legs, but The Littles needed comforting and circled around for hugs and cuddles. I went to hug The Beloved for saving my life!

And after all this, we didn't even get any cute little glasses for Willie. Dang it! He did sprout that bottom tooth today though! It looks like a normally shaped tooth, right next to the spikey sharp one, and about 3/4 of the tooth surface has erupted. He's going to look funny with a normal tooth and a sharp spike right in the bottom middle of his mouth, but I can't wait to see his smile when they're both in!

Yeah, It's Me Again

So a few days ago, The Beloved and I were sitting on the couch with Jack, or Waby as he's now going by. Waby, the Beloved and I were playing. I'd called him at work immediately last Wednesday to report to him that "Your son is up on his hands and knees ROCKING!" And every day since then, when he's on the floor playing with Waby, I tell him, "Honey, teach him how to crawl." "Honey, show him how to crawl." "Honey, make him crawl!"

We were talking about how to celebrate the Waby's first birthday. Incidentally, The Beloved gave him that name ~ not his Mommy who loves him way too much to ever do such a thing. So, we've decided on a small little immediate family thing Friday night, his actual birthday, and we'll have cake, ice cream, 1 little candle (!!!!) and presents. The Buddy Walk is two days later, the next Sunday, so we're saving our party hats for the 20th of the month, hoping we won't be tired and cranky for party day. If you're in the area between noon and 6 pm, please do stop in for some cake and ice cream!!! Really...come on over!

So out of the blue, tears are welling in my eyes and I'm trying hard not to let The Beloved see it. But, he knows when I'm upset, even though I was really out of his line of sight, sitting somewhat behind him holding Waby. It's like the air changes or something. He just knows. And he's concerned. So I spill, once I trusted myself to speak and not squeak. I tell him that I'm just now realizing that Jack won't hit any of his milestones before he turns one. The Older Littles took off walking on their first birthdays. Not days before. Not days after. On their first birthdays. We have it on film and on video.

So...The Beloved being The Beloved, said that we knew he would have delays but that he's doing good, so let's not be upset by it. To which I say, me being me, that yes I knew this, and I'd adjusted my sights on smaller goals. Like crawling. Or at least sitting, for crying out loud. To which The Beloved pulled out his grizzly bear and said, "Don't be like that. He's already been hit with more than his fair share of hard knocks, don't put more on him. Cut him some slack." Wow. Not quite the support I was looking for.

So, we agreed that yes he is doing well and that he's healthy, and that it won't matter one whit in five years that he wasn't crawling, sitting, walking on his first birthday. But I was still sniffley. So The Beloved reeled in his claws enough to say, "I know you're a little upset that he's not doing everything the other two did, but try not to be upset while you're holding him because he already knows when you're sad. He loves you so much, more than any one else, and I don't think he understands when you're sad. I don't want him to think it's his fault." Dang. So I said, in my own defense (He was that adamant about it!) "Well it's not as if I walk around all day sobbing with him in my arms. You're just now hearing about this for the first time!" He says he knows, "Just be careful with him, I love him so much."

So yeah, it's me again, struggling just a little with the delays. Any other day of the week, I'm fine with it. I'll be fine with this too. As The Beloved pointed out in a more gentle and kinder tone, he's going to be our little baby longer than than the other two were. And that is a fine thing. Fine, indeed.

Beef & Banana Cream Pie!

No, not together! That would be gross! Let me explain. Aunt Leanne, better known as Cheeseburger Head, gave Jack his very own food name! Yeah Aunt Cheeseburger Head! She named him Banana Cream Pie! She gave her own darling niece Josie the name of Catfish with Ketchup! I am tickled pink with her permanent and non-negotiable name for Jack!

Banana Cream Pie!

And now, here's the beef! As in beef in beef broth. This is his first taste and you can see the drool running down!
It's safe to say that he loved it!

And I was clearly not shoveling it in fast enough!

He gobbled up the whole jar, along with the carrots and bananas-in honor of his new moniker!

"Mmmmm, mmmmm, good!"


And now for some practice at self feeding!

UP!!!!

I'd been feeling particularly blue about the election results this morning and I didn't think anything could cheer me up. I am sorely disappointed in my state. I'd had such high hopes...but it's to be more of the same. With higher taxes.

Laurie arrived to do Jack's vision therapy. Jack loves her and he loves the new and different toys and activities she brings for him to play with. We started talking about the election results and I got blue all over again. While Laurie and I gabbed and finished cups of coffee, she handed Jack to me. I laid him belly down on the couch next to me.

And he did this!
And while Laurie encouraged him with toys, he started rocking back and forth on his hands and knees! Laurie and I clapped and cheered to beat the band!
After Laurie left I put Jack on the floor. He flipped onto his tummy and got his butt up in the air and his knees under him to do more rocking! I know this looks like forward motion, but he's rocking forward before the back swing!

Here he is showing off his excellent form!


And some serious rocking!
Before tuckering out for a nap! Too bad that chubby thighs aren't this darling on grown-ups!

I Voted!!!

Did you???

The Boy Is Trying To Kill Me!

So what's wrong with this picture????

THIS!!!!

and this...

...and most assuredly this!
The soggy sock.


The Poddest of Pods and The Pea-Pod
Brothers!

Once The Pod went to bed and The Podlet was wide awake, I placed Jack far away from socks, except for the two he had on his feet but had yet to try to pull off to snack on, and put him on his tummy about midline in front of the couch, in the middle of the wide swatch of lavender carpet, that while perfectly fine in The Girlie's faerie room, is rather unbecoming on top of the rug-over-hard-ceramic-tile-on-top-of-cement-slab living room floor. It's there to protect his melon. So, that is where I put him while I ran to the bathroom.

I'm telling you, I barely sat to conduct my affairs, but in the time it took me to quickly pee, wipe and wash, he managed to roll far, far away from the soft cushioned surface I lovingly and protectively provided him with, and pulled off both of his socks.

This is what I returned to...
...another sock dangling from his mouth! From now on he's either going to have cold feet or I'm going to start stapling his socks on!

He's a very bad boy. Hence his Daddy's new name for him, Danger Baby!

What do you suppose he's up to now?

"What? You don't trust me?"

"Because you shouldn't!"

It's not bad enough that he used his arms to pull his head into the gliding mechanism of the ottoman, then he extended his legs to keep it there. The ottoman is now in the garage until further notice! Along with all of his socks!

Halloween!

I'm not entirely sure why I thought we needed so many pumpkins...but here they are, ready to gut and carve!


This is one of the Middle Little's creations.

Here you see one of The Girlie's pumpkins on the left, The Middle Little's on the right, and one of Jack's pumpkins smiling from the pillar.

Jack in his Skelly-Bones costume...with his eyes, of course, closed!

The Middle Little in his alien costume!

Yes, that's a girl in there. My Girl. In a horror flick costume. Who is this kid???
These are the only two pictures I have of The Older Littles, but in my defense, the instant we got home, they took off to raid their loot! Once they'd consumed 12 pounds of candy each, they weren't going to hold still for pictures...but the sugar crash, when it came, had them sleeping really well!

Since The Olders were hiding in their rooms, "secretly" gobbling up candy, The Beloved and I took pictures of Jack!
Here he is getting a helping hand from Daddy so he doesn't topple into the flower bed!

This is The Middle Little's other pumpkin - same theme!
"What happened to your guts???"

"Don't be grumpy pumpkin...

"...I'll share my candy with you!"

"Dude! Cheer up!" You can see my attempt to copy Jack's "Pop-eye" face onto the small pumpkin over his left shoulder.
"I brought my little pumpkin over to cheer you up!"

"Hey! Little pumpkin...go sit next to this grump...
...and spread your smile to his face!"

Blue raspberry Dum-Dums!

"Hey Mom! Candy is gooooood!"

"Thanks Daddy! I kept hitting my nose instead of my mouth!"

Here's Jack's candy poured out all over him! Notice that the costume feet are just hanging, because Jack's actual feet are a good 6" inside the legs!

All Jack was really interested in was this crinkly Teddy Grahams package!

CANDY!!!!

Jack and his pumpkin smiling at each other!

Despite the pumpkin being nearly full to the top, Jack kept picking it up and rolling over with it! His arms have gotten much stronger lately. Later this evening The Girlie squeaked "Look at him! Look at him! Look what he's doing!" And look we did! Once his jammies were on Jack was on his tummy playing. And then he lifted up on his forearms, lifted that belly off the floor and started rocking! He wasn't quite up on his knees, but he was rocking none-the-less!

Look at all that loot!

I love the naked little toes sticking out!

And here is a pic of the back of the costume!

We'd started our trick-or-treating with Jack in my arms to drink his bottle, but he was too, too interested in the goings on to eat. So, into his stroller he went. I sat his pumpkin in there next to him and he went door-to-door pounding on his pumpkin, with very little interest in the candy being tossed into it. He smiled at every one who came out to coo at him and say how sweet he was! He pooped out about the last ten minutes, but once we were in the house he woke up, finished his bottle and was ready to check out all that loot!

It's interesting to note that with both of the Older Littles, every time I tried to enlist The Dear Daddy's help with photo propping, he'd roll his eyes and would only go along with a few feeble attempts after much badgering. With Jack, he's right there, setting up photos, adding props, encouraging Jack to go along, making suggestions, lending ideas...he's a changed man!

I read recently that approximately 75% of marriages do not survive a diagnosis of autism past the first year. And an overwhelming 80% of marriages are strengthened following the birth of a baby with Down syndrome, and those marriages remain stable for the long haul.

I'm giving us odds of 2 X 75, for two kids with ASD, to equal 150 points to the positive, because we survived it. Twice! Add 80 for Jack's Ds, for 230. I'm giving us another 100 points for the surprise pregnancy, and another 1000 because The Dear Daddy rocks fatherhood so well. So...we've got a surplus of 1,330 percentage points. And I counted on every single one of them when I had to tell The Beloved that the engine light was on in the van this morning on the way home from driving The Girlie to school because she missed her bus! Oh, how I do love a good run-on sentence!